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@chris47

Mils -
If in fact all of your symptoms are truly from an an unidentified autoimmune disease, learning to manage your symptoms is likely your best pathway forward.

But to develop this pathway, its important that you focus your efforts on trying to ‘connect the dots’.

I have had to deal with a cascade of viral triggered Celiac Disease symptoms for the last 40 years.

First, understand that if you do have an autoimmune disease, most ADs are not curable. It is a hard new reality to deal with - but it is important to try to control your emotions so that you can better understand how your symptoms are either connected and/or unknowingly added to based on your activities. And, once you get this understanding - you can develop as number of management techniques/tools you can use and you have a better chance to deal with your symptoms.

How to connect the dots: Over the years I have developed as many as 10 ‘autoimmune’ symptomologies that are structurally connected. And understanding the sequence of what each new persistent symptom was and how it connected to the previous new symptom was vital in creating my management pathway.

Although at its onset I did not appreciate how severe the damage that a viral infection can do. In retrospect, that viral infection clearly triggered a family history of CD on my mothers side - she was of Irish ancestry. And CD is a major problem of white Northern European populations - particularly the Scandinavian and neighboring countries. So your ancestry can play a role in your current medical issues.

Where to start: As the medical system learns more about the damaging effects of a viral infections - Vasculitis or inflammation of the body’s vascular vessels can be a significant issue. FYI - Covid is not a flu causing virus as much as it is a Vasculitis causing virus. And, which body parts or organs are damaged by a lack of adequate blood supply can take a while to develop. And, almost certainly will be identified as a major cause of what is now called ‘long covid’.

So, create a list of any unusual symptoms that you had during and immediately after your viral infection and the sequence each new symptom developed. And don’t limit that list to major new physical symptoms alone - as seemingly minor post infection symptoms - like fuzzy brain episodes, afternoon fatigue, new food reactions, rashes, loss of smell or taste, etc can be the footprints of what damage that viral infection may have caused.

Comment: You face a long slog to fully understand how the dots are connected and what tools you have to manage you new realities - BUT working with your MD’s, helping to get them educated, and reaching out for advice on this site are major steps in the right direction.
Chris47 -
PS - you might try the following as possible new tools: get and stay gluten free, switch to only organic food, if vegan start eating any food high in vitamin B12, take B and C vitamins supplements, use dermal patches with Cortisone ointment on localized pain areas, use ThermoCare heat pads to reduce joint and muscle pain.
At the MD level, get periodic CRP for a measure of inflammation and Cortisone blood tests for Adrenal functionality.

And above all, understand that it is imperative that you act as your primary advocate - as modern medical reality is that the old GP as your quarterback guiding your healthcare is no longer the norm!

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Replies to "Mils - If in fact all of your symptoms are truly from an an unidentified autoimmune..."

Thank you Chris, I really appreciate your answer. This was the kind of support I was looking for. I have been diagnosed in March, although the diagnosis is still uncertain, they believe it is an autoimmune disease since I responded well to steroids and then plaquenil. Aside from the beginning, this is my first flare, and the pain is new and much worse than before so I became even more anxious thinking all possible explanations. The doctors don't really have an answer as to why the symptoms are coming back, why new and why worse, but it is great for me to find support from others who have gone through this before I did.
Thank you for all your advice, I am starting to try and connect the dots on my own since, as you said, I will end up having to advocate for myself